Today would have been the start of Migraine Week in Belgium. Due to the current COVID-19 crisis, it has been postponed until September. Sadly, my migraines will take no such hiatus. 1 in 5 Belgians will suffer from some form of migraines during their lifetime. That number is even higher for women, closer to 1 in 3. Source(Dutch)
- My Journey
- We Are More Than Our Illness
- Tips and Tools for Working With Migraines
- What Can You Do as an Employer or Colleague
1 in 5 people will suffer from some form of migraines during their lifetime.
Hi, I'm Silke. I've had migraines since I was 14 years old, and have been in treatment for them since I was 15. On average, I have between 5 and 10 migraine attacks per month, ranging from a dull ache to debilitating pain. It used to be a lot worse. With a combination of medication and lifestyle changes, I am still able to live a good and fulfilling life. I am also fortunate to live in a country where health care is readily available and affordable, and where I have a right to paid sick leave.
At 14, I had my first migraine. After a couple of months, I stopped mentioning them to my parents. Nothing was being done anyway, so why bother. Taking Paracetamol became a regular occurrence. At that point I had about 15 to 20 attacks per month. It all jumped back to the forefront while on vacation with my family. It was my birthday. I ate breakfast, and went for a swim. A bit later I excused myself and went back to my room. My parents came looking after some time had passed, and found me, in severe pain, huddled under the blanket, alone, and in the dark. This is when we all realized how serious it was. That I wasn't just faking or seeking attention.
Some tests were done. Migraines are a diagnosis of elimination. All the tests came back negative, so I had migraines.
We saw a neurologist, and I was prescribed several medications. I also had to start logging my migraines, how long they lasted, what the symptoms were, what medication I took and whether they helped. The migraines lessened slightly to about 10 to 15 a month. I was told my migraines were difficult to treat. No tests were done to conclude this, like migraines themselves, it was a process of elimination. The medication wasn't working as well as it should, so the conclusion was that I had a difficult to treat variety.
Migraines are an illness of elimination.
At 17, I had my worst migraine attack up until then. That evening, I asked my dad why I had to suffer like this. I couldn't take it anymore. I didn't understand why when a dog was in too much pain it was put down, but that I had to go through it. He had to half carry me into the doctor's office, where I was given an injection for the pain. I do not remember the pain itself, but my dad's face of grief and pity when I said those words to him will never leave me.
I was under a lot of stress at school, being bullied, feeling excluded, and trying, despite what I now think was a depression, to keep up my grades. I was also underweight. One of the side effects of my medication was that I was constantly hungry, regardless of whether I ate. So I didn't. Unless people were watching.
University was a fresh start for me, I became happier. I was surrounded by supportive friends, and I was starting to realize how unhappy I was at home. But it didn't last. The course load was too much for me, both academically and because of frequent migraines. I had also never learned to express my feelings or handle stress. Blaming myself, I spiraled into a depression. After 5 years I was finally able to make the decision to stop studying and seek help.
Around 2015 I had tried every migraine treatment available to me.
By that time I had also given up hope when it came to my migraine treatments. I had tried every type of treatment available to me, even Botox injections, but none of it was making much difference. Nothing new had come out since my migraines began. And all the medication I was taking had side effects. Whenever I brought this up with my neurologist, he waved away my objections, stating that I didn't have it as bad as some, who had migraines every day. Appointments were something that I started to dread. Usually they just ended with him prescribing more medication. This resulted in me distrusting doctors in general.
After quitting University I got help, and became happier again. My then boyfriend, now husband, and I moved in together. In him I found an ally and my best friend. I worked in a clothing store for a year. Helping customers and keeping the store running was something I really enjoyed doing. After a year the store didn't renew my contract, and I started looking for my next job. But I also realized that retail might not be the best thing for me job wise. There was no leeway for my migraines. No possibility for flexible hours. It was then that I realized that I wanted to get into IT. It had always interested me to some extent, gaming, fixing small internet problems. It was even the last thing I did at my retail job, I fixed the connection between the credit card machine and the cash register, and wrote my first piece of documentation: a guide for how to fix it if it happened again. So I went back to school, something I had vowed never to do again after University. Funny how those beliefs that seem written in stone can change in such a short amount of time.
My retail job provided no leeway for my migraines.
My migraines were still a constant companion during my IT studies. A couple of months in I had the worst migraine up until even now. I dragged myself to the doctor's office, and was told to wait my turn to see a doctor. So I sat down on the floor, in the darkest corner I could find. After half an hour I went back to the reception desk and asked if there was nothing they could do to get me to a doctor quicker. I was told I had to wait, or go to the ER, so I sat back down. My boyfriend found me, huddled into a ball in the corridor, hitting my head against the wall, tears streaming down my face, still waiting to be seen by a doctor. It took just under 2 hours for me to get help.
That was a turning point for me. I could not go on like that. I made a new appointment with my neurologist, the first one in 2 years. After getting new medication prescribed, yet again, it didn't help.
I started doing my own research and found an advertisement for Cefaly, a device that sends electric pulses through the nerves on your forehead. I was very skeptical, but open to anything, what did I have to lose, after all. They advertised that it could lower the amount of migraines you have if used every evening. That didn't work for me. However, it gives me a lot of pain relief during migraines. So much so that I can fall asleep with it on. I still use it to this day. It is also the inspiration for the image below. It started out as a joke between my husband and I, because when I'm wearing the Cefaly I look like an alien. So I started calling myself an Alien Warrior Princess whenever I put it on. It's my way of taking away some of the awkwardness that ensues when someone seen me wearing it for the first time. I had this image commissioned by @mirlu_exe because I wanted to feel empowered when I wear it.
I started taking my preventative measures more seriously then as well. By preventative measures I mostly mean removing possible triggers. For me that includes severely limiting alcohol and caffeine, including soft drinks. While doing this I also realized that caffeine could be used to get rid of a small migraine, but this only works if your general intake of caffeine is very low.
My own doctor had also been telling me that the birth control I was taking was dangerous in combination with migraines. It could lead to blood clots. Up until then I hadn't cared, because I had been convinced by my neurologist that the pill I was on lowered the amount of migraines I had, and that going off it would be bad considering my history with depression. But I was desperate, and during my research I discovered that my birth control could, in few cases, cause more migraines. After discussing with my doctor I switched to an IUD with fewer hormones. The change was immediate. I went from 7 to 15 migraines a month to 5 to 10. These events showed me that there was still hope when it came to treating my migraines. It made my life considerably easier.
I am still doing my best to figure out how best to treat my illness, and most importantly, I am teaching myself not to give up. Last year, a new type of medication came out for migraines. At the moment it's not possible for me to take it, but it gives me hope for the future. And there are several studies still ongoing.
These events showed me that there was still hope when it came to treating my migraines.
In my 2nd year of studying IT, I had another health scare. I had always been somewhat wobbly on my feet, and I had never been particularly strong. My feet and legs frequently fell asleep as well. Up until then I had always attributed it to side effects of my medication. But during the course of 3 months I became less mobile, ending with me having to use support while walking. After some bloodwork it became clear that I had a chronic vitamin B-12 and D deficiency. Luckily it is very treatable, with regular shots and pills.
After school, I found employment in a company that was very willing to work with my migraines. Sadly, due to COVID-19, I was let go. But I am confident that I will find employment again soon.
All in all, I am very happy with my life. I got married to my best friend, have friends and family that support me, have a nice home, and am able to do meaningful work. The good times as well as the bad have shaped me to who I am today, and I am proud of the journey that I have made. Yes, I would rather not have migraines, but that doesn't stop me from enjoying what I do have.
If there is one thing that I know for sure, it is that diversity and inclusion is an asset to any team and company. And that includes people with migraines. We bring new ideas and insights to the table. And we are often very dedicated and hardworking. We have learned that each moment is important, simply because a lot of our time is taken away from us.
Coding has allowed me to tailor my career and workday to my needs. The ability to have flexible hours is a great asset. If I miss a morning because of a migraine, I can make it up later. COVID-19 has also shown many businesses that working from home is not only possible, but productive as well. I certainly hope that this is something that stays, even if only for a day or two every week. Not having a work commute increases the free time I have. Time I sometimes have to give up because of a migraine, so having more of it is always welcome.
I would like to start off by mentioning that the Tools and Tips listed below are not exhaustive or necessary/useful for everyone. Each person is different and has different needs and preferences when it comes to how they handle their migraines. These are all based on what works for me.
Keep your medication close to you, preferably in a small container. It's easier for me to remember to bring the container, than each individual strip. You also do not want to have to search a messy bag for a small strip of medication that somehow ended up wedged into a tiny corner.
I also keep a piece of candy or a single wrapped cookie in there to get rid of the taste of some of my meds. Why medication still tastes so foul is a mystery to me, looking at you Sumatriptan.
Bright screens can feel painful to look at, especially blue light. Matte screens cause less glare than reflective ones. Opt for matte screens that are easily dimmable, built-in blue light filters are a plus. My PC screens are by iiyama, but I'm sure other brands have this too. There are also lots of tools that you can install to filter blue light, if your screen does not have it built in.
When I have a migraine, sound can be annoying. Not just loud things, but sound in general. Sometimes it seems like all noise is coming in at the same intensity, regardless of proximity or loudness, making it difficult to concentrate. Headphones help me with this. I prefer over-ear, because they already block out some noise in and of themselves. Noise-cancelling headphones can also be considered. However, it is important to test these out. Some noise-cancelling headphones emit a frequency that is still painful to me.
Sitting hunched for long periods of time can cause pain in your neck and shoulders. For me, this can make migraines more painful. Being hunched over is still my default position when I'm concentrating, and it takes time to correct something you've done for years, but I do notice a difference.
Keep your screens at a correct viewing height. Put laptops on a correct height as well, and attach a mouse and keyboard. Right now I'm using a shoe box, whatever works is fine.
This is not always an option, so see where and how you can fit this into your work schedule.
I never have auras (sensory disturbances that happen before and/or during migraines). This means that I can only take my painkillers when I already have a migraine, while it's advised to take them immediately when you get an aura. It takes about 30 minutes before they work for me, and I feel they work better, or have a higher chance of working at all, when I'm somewhat relaxed. So I try to either take a break, take up a slightly easier task, or put on my Cefaly while I wait for the meds to kick in.
If your workplace allows flexible working hours, use them. Personally, I have a tendency to push myself too hard because I don't want to allow my migraines to dictate my life. And while that seems like a logical way to cope, at least in my head, it causes more problems than it solves. My migraines often happen in the morning. On those days, I allow myself to wait until my medication has kicked in and head off to work afterwards.
If you have paid sick leave, use it. There will be days when all you can do is lay in a dark room and hope the pain goes away soon. This is what paid sick leave is for, you have as much right to use it for migraines as for the flu.
The fact that you ask this question is already a good sign. Generally, my advice is, listen to the preferences your employee or colleague has. Each person is different. This includes how open they are about their migraines, and how much information they are willing to share.
Also, and I cannot stress this enough, do not pity them. I have had multiple encounters with people where they have looked at me like I'm a wounded puppy. We just want to live our lives, please let us.
This post has become more personal that I anticipated, but I hope that by sharing my journey and lifting up the veil, I have been able to show you what it's like to live with migraines. I would love to hear your stories, how you are dealing with your migraines, how you experience them, how you cope with your own pain or of those close to you.
you are more than your migraines.